Co-design is a core concept for the development of contemporary health services that most efficiently and cost-effectively meet the needs of consumers with complex needs, their families and carers. It is an alternative model that is inclusive, co-operative, adaptable and effective.

codesign kit angelmans syndrome25Delivering health services to those with complex needs can be difficult. Input may be required from multiple sources, including medical specialists, allied health professionals, disability service providers as well as the community and private sector organisations. For an individual with complex needs such as an intellectual disability, it is the parents or carers who have traditionally had to work through the complex ‘maze’ of services, to connect with and coordinate the relevant providers. Recently, there has been a shift in provision of health care whereby clinicians and health practitioners are moving away from the old medical models of care. To better meet their clients’ needs, strategies such as co-design are being increasingly recognised as an opportunity to overcome existing barriers and develop new pathways for standards of care.

Consumers often expect to have a say in how health services are delivered to meet their needs, and are willing and able to contribute. They have a lot to offer, and with their knowledge and lived experience are able to enhance services for themselves and the community as a whole. Through a collaborative process health service providers work in equal, respectful, active partnership with clients and families to design care systems that focus on enhancing their quality of life.

Co-design creates an opportunity for health practitioners and consumers to walk side-by-side through the process of establishing priorities, planning, developing, implementing and reviewing care systems to deliver the best possible outcomes. It requires ongoing commitment from all parties to ensure that limited resources are deployed in the most efficient way over an extended period of time. Co-design places the individual and their family at the heart and centre of deciding how health services are delivered.

Since 1993 the Kogarah Developmental Assessment Service has been working in partnership with the Angelman Syndrome Association to provide health services that best meet that community’s specific needs.

This unique relationship between a health service and a parent association was built upon co-design from the outset. It was recognised that managing and meeting the complex health and support needs of those with this rare syndrome would be best achieved by working in partnership. Through this collaboration an integrated health care and support system was created to ensure the best possible ongoing health and wellbeing of children with Angelman Syndrome.

This partnership has continued for over twenty years now, and the process of working together hasn’t always been easy. However, much has been learnt by everyone involved and the experience has shaped and refined the process of co-design over time. This has served to strengthen the partnership and deepen the commitment to achieving shared goals.

Co-ordinating services for those with intellectual disability, their families and carers, can be a complicated process. The individuals at the centre of this group often have a complex range of socio-cultural and medical needs and require input from multiple groups, services and agencies, each of which has distinctly different structures, systems and cultures. A number of different variables have to be carefully balanced, and resources are limited.

One of the key lessons learned through the Angelman Syndrome success story is the vital importance of building flexible care networks that are geared towards supporting clients and ensuring they are given a voice in determining how their priorities will be met. Health services have a critical role to play in forming links between agencies and co-ordinating the delivery of integrated health care systems. This is particularly true in regional and remote areas where resources are scarce and access to specialist medical advice is limited.

The Metro-Regional Intellectual Disability Network is a partnership model for improving health care for people with intellectual disability in regional and remote areas of New South Wales. Since 2010, the MRID based in South East Sydney, has been drawing upon on the success of the Angelman Syndrome experience to develop new ways of delivering specialist health services in the Illawarra and Shoalhaven local health districts.

Working collaboratively with primary and community health services and non-government organisations (NGOs) in these areas, they have applied the foundation principles of co-design as an integral feature. The MRID has demonstrated in practice how co-design can play a significant role in improving standards of care for consumers, wherever they may be.

Health service providers are increasingly encouraged to introduce co-design principles into their practice.

Across Australia, governments and government agencies, both state and federal, are looking to co-design as a model for improving all aspects of c service delivery. In health, the National Safety and Quality Health Service Standards (established in 2012) have established partnering with consumers as a critical consideration in the design and delivery of all health services. This requires health service providers to ‘create a consumer-centred health system by including consumers in the development and design of quality health care’. This approach leads to health care that is respectful of, and responsive to, the preferences, needs and values of patients and consumers.

Extending on this, the Australian government’s National Disability Insurance Scheme (NDIS) actively promotes collaboration between service providers and consumers in the design of innovative models of care – this is co-design.

Co-design provides a structure through which consumers and professionals may work together. It is an important concept that will continue to have relevance and resonance well into the future.

Co-design involves individuals with complex needs, or their carers and families, working closely with specialists, agencies and professionals who provide them with services. Whether it is medical, health, education, disability or other support services; this approach allows the consumer to help design tailored care strategies that are most suitable for them.

In practice, the co-design process involves:

  • Working together to solve problems through open discussion and active contribution;
  • Sharing information, reflecting on and learning from the experience of others;
  • Bringing together specialist expertise, lived experience and a willingness to innovate;
  • Collaboratively developing, planning and implementing new models of care;
  • Building quality assurance into service delivery in a cycle of evaluation and improvement.

Co-design offers benefits to all parties and leads to:

  • Collective insight into and understanding of the consumer experience;
  • Opportunities to identify gaps in existing health and support services;
  • Identification of future directions for service expansion and research;
  • Opportunities for expansion of collaborations between consumers and providers.

Co-design can transform the quality of healthcare for individuals with complex needs on a macro or micro level, and can significantly improve their lives in meaningful ways.